Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, June 23, 2011

Grim News on Both Sides of the Atlantic

Every evening I look out my living room windows I consider myself an exceedingly lucky man. I have much to be thankful for. My life is rapidly resembling what it was before my wound last Fall. My son is home from college and we have spent some real quality time together. My family was and remains supportive. All this is quite unusual for a person with a disability. The ordinary is too often not possible for people with a disability. When I openly state this to others I know they look at me and roll their eyes. Come on they say, things are not that bad. They are correct. For me life is sweet. Life is not so sweet for my fellows with a disability. How do I know this? It does not take much thought on my part. Simply living life I come across needless obstacles large and small. I read about discrimination people with a disability encounter every day. For instance, a man was forced off an airplane by a pilot who deemed him a flight risk, a person with Down Syndrome was barred from boarding a flight, a couple being refused service in restaurant because they used wheelchairs, service dogs barred from schools, and the list of violations goes on and on. Little or nothing is done. Pilots get sent to sensitivity training, airlines are fined, and the cycle of civil rights violations endlessly repeats itself. Progress is a myth--or so I think on this gloomy day. I am gloomy not because of the weather but I have carefully read two well crafted and researched surveys. The results are troubling.

The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:

56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment. 50% of people with a disability report experiencing weekly if not daily discrimination. 37% report people's attitude toward them have gotten worse over the past year. 41% of people without a a disability state they have never witnessed a person with a disability discriminated against.

The ARC survey is equally grim.

Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.58% of parents report spending more than 40 hours per week providing support for their loved one. 46% of parents report that they have more care giving responsibilities than they can handle.88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member. 75% o families cannot afford or find after school activities, home care providers, or respite care. 62% of families report services utilized have been cut or eliminated. 43% of families report that schools have cut back on services. 32% of families report they are on the waiting list for government funded services with an average wait of more than five years. A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.

I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.

Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.